Q: My daughter is in Kindergarten and has just been diagnosed as Autistic. She was assessed after her teacher pointed out unusual things she’d noticed at school and we were worried about how little she sleeps. She likes going to school, and seems pretty happy in her small group of friends. She doesn’t have any learning problems. So should we even tell her about her autism? Should we just keep an eye on it and tell her if it ever becomes a problem? Or should we not tell her at all and she will find out when she’s an adult if it becomes and issue?
Mum of daughter aged 5-8
A:
There are many “justified” responses you could receive to this question. Even within the autistic community people have differing opinions on this. However I do feel that the one I’m going to express is one shared by the majority of the autistic people.
Tell her
Just as you would likely tell her if she was asthmatic, or diabetic, or anaphylactic, it is for her own wellbeing that she knows. Realistically, she won’t understand exactly what you’re telling her at first. But simply explaining that there are different ways for brains to work, and the way hers works is called “autistic” is a great start. Explain which traits and behaviours you’ve observed in her that this explains, both the skills and the tricky bits. Point out a few differences between her and a neurotypical person, so she can start to identify what her neurotype means for her.
There are some really fantastic resources available that are designed and produced to appeal to, and be appropriate for, kids.
Em Hammond AKA Neurowild, is an incredible AuDHD speech pathologist who creates and illustrates an astounding output of neurodivergence resources. Her “Let’s Talk About Your Brain” series includes a brilliant post about being Autistic.
Sandhya Menon is an AuDHD psychologist with a strong focus on a neuroaffirming approach, and authentic behaviours. She has written two beautiful picture books about neurodivergence.
The Brain Forest discusses the concept of neurodivergence, and that there are many neurotypes. It not only educates on accomodations and inclusion, but actively celebrates the importance of neurodiversity.
The Rainbow Brain is more specific to the experience of being AuDHD – both autistic and ADHD.
For older children and teens, Abigail Balfe’s A Different Sort of Normal depicts her own experience of being autistic, particularly when young, and is presented in a heavily illustrated format.
WhY Tell Her?
If your child had cerebral palsy, chances are you wouldn’t let them spent their life feeling rubbish for not being able to run like the other kids. You’d explain that there’s a reason, that their body works differently, and that they should be proud of their efforts. That they have other skills. That they aren’t just slow and useless. Why wouldn’t you give this to autistic kids?
Adopted children are considered to have far greater risks regarding poor mental health the longer their adoption is not disclosed to them. Those raised knowing they’re adopted from the beginning have better mental health outcomes. Why would this be different for autistic kids?
Being aware of being autistic prevents a number of social, emotional, self-esteem, and mental health issues:
- Knowing that your social skills may differ to neurotypical people’s allows for self-advocacy, self-forgiveness for any errors, and decreased social anxiety. Not knowing you’re autistic, but repeatedly experiencing social mistakes and ostracism can be debilitating.
- Recognising your boundaries and limitations as an autistic person, rather than feeling oversensitive, over-emotional, and “flustered” when you’re actually experiencing overwhelm, can prevent meltdowns.
- Ostracism, frequent unexplained meltdowns (or “tantrums”, as they’re often perceived in seemingly-allistic people), misunderstandings, criticism, and failings are all detrimental to self-esteem, self-identity, and mental health. These things are frequently the result of living as an undiagnosed – or, as would be the case here, unadvised – autistic person.
- Autistic people are often misdiagnosed with mental health conditions, particularly if they are unaware that they are autistic. Hyperfocus and stimming can look like mania. Meltdowns can look like depression. Mutism can look like a breakdown or even been perceived as a intellectual disability. Autism was once considered a form of schizophrenia due to some of the similarities in presentation. If your child lives their life not armed with the knowledge that they are autistic, perfectly normal and explainable behaviours can look scary, unhealthy, and even dangerous. It can result in mismanagement of their condition, mismedicating, and even inducing mental health issues.
Keeping It Secret
I am yet to encounter a single autistic adult who has either said, “I wish my parents hadn’t raised me as autistic, and just let me figure it out for myself.” Or – as a late diagnosed adult – “I am so glad I didn’t figure this out until now”.
It’s a cliche, but knowledge is power.
Knowing you’re autistic allows you to understand yourself.
It allows you to forgive yourself.
You can advocate, protect yourself, set boundaries, have realistic goals, garner adequate support, find your people, and celebrate your strengths rather than living with the feeling that you are “less than”.
Welcome to the Club
I would suggest not only telling your daughter she is autistic, but telling her many, many other amazing people are too. Introduce her to the existence of incredible young women like Greta Thunberg, Chloe Hayden, and Grace Tame. Join Yellow Ladybugs, the I Can Network, and TARA. Read about historical figures who were likely autistic. Point out neurodivergent actors, presenters, musicians, friends, family…
Show her she’s part of a very special group of people. A group you can’t just join by working, or trying, or even paying. It’s exclusive. And she’s a member.
Welcome to the club, kiddo. It’s a great place to be!